What the HHT?
A blog for the HHT community
Front Page Announcements
New HHT Center Gives Hope to Father and Son with Rare Genetic Disease
May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the Gutowski family now as a team of doctors work together to treat their abnormal blood vessels caused by hereditary hemorrhagic telangiectasia…”
Read MoreAsk the Doctor – HHT and PH (recorded)
Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, discuss the dual diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) and Pulmonary Hypertension (PH). This dynamic duo take you through identifying the signs of PH, its relationship to HHT, diagnosis and treatment, and the resources…
Read MoreCanada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”
Read MoreSURVEY: COVID-19 and Rare Disease Research
Cure HHT has partnered with Genetic Alliance and we need your help! Your voice is urgently needed in the fight to end COVID-19 through a 5-minute survey. You can fight this virus with information and without leaving home! Whether you are currently feeling healthy or in need of medical attention, understanding YOUR specific circumstances can help scientists study…
Read MoreManaging Stress and Emotional Hurdles in HHT (recorded)
Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine, discusses how to manage stress and emotional hurdles in HHT. Living with HHT often means coping with a host of unpredictable symptoms, including nosebleeds, anemia, fatigue, shortness of breath, headaches,…
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